Not a Typical Triple 3--Am I Alone Here?

Wink

I had just turned 50 when I was dx; no family history on either side; I have 3 children and breastfed them all.  I had regular mamograms and all of a sudden, here's a mass in my left breast.  My cancerous lump was sore and felt more like a fibroid tumor (to me), anyone else have that experience?

ilovemysweetmomma

My Mom was triple negative and as far as I know didn't test positive for either BRCA gene.  The only family history she has is her aunt, and hers was only Stage I.  My aunt has since passed, but not because of breast cancer.  So I guess you could say my Mom was not a "typical" triple negative.  My Mom was 52 when she was first diagnosed.  The only risk factor my Mom really had was that she had one of my brothers at age 40.  If you have kids over the age of 35 thats supposed to be a slight risk factor. 

guitarGrl

ICudaShuda - I'm not sure there is a typical TN. What you read is that a larger percentage of African American women and a large percentage of Eastern European Jews are TN (especially those that are BRCA+), but that doesn't mean MOST TNs are of those two ethnicities.

It's a problem of interpreting statistics. While I am of Eastern European Jewish decent, I am not BRCA+. It drives me mad when I read articles that imply that TN is an African-American or young-woman thing (I am neither).

Adnerb - there are a bunch of us in San Diego who get together for lunch once a month - next one is on the 30th. 3 of us in that group (3 different ethnic backgrounds) are TN. I can give you more details if you are interested. 

LRM216

I reported on my statistics earlier on in the post, but I get very angry at times over our lack of information and the lack of additional drugs for us, such as the ER/PR+ gals have.  I honestly blame the drug companies for the lack of funding for our research, as we are only 15% of all the breast cancer diagnoses, and I sometimes think we aren't a "large" enough group for them to invest their money in us - hence we suffer because of it.  I realize that more researach is beginning to occur for our group, but I believe that only future generations will actually benefit from it.  Even the Parp inhibitors in trials now are only for those of us unlucky enough to have it spread already.  Do we have to be riddled with cancer all over our bodies before someone finds something for us?  Sorry about my rant, but I have great anger that we are so left in the dark and have oncs that don't have any answers for us.  I hate this dreaded disease so much and what it is doing to each and every one of us.  God bless us all.

Linda

angelsabove

Linda,

I agree with you. I was shocked when I was diagnosed and realized the truth about this TYPE of cancer. My onc. told me one thing is for sure. Researchers worldwide are working on it. I had comfort in that but I also thought (WELL I HAVE IT NOW SO THEY BETTER HURRY) We all know how long it takes for the FDA and all this other stuff. I too have my days of ranting. I am 36 years old and as I said earlier. No family history.....Not BRCA 1 or 2. I am a caucasian...So um I still dont know WHERE it come from. I just know when it came it came out of NOWHERE. Oh and let me add I have three children. I had my third one @ 28 years old.....SO I had all of them young and I did breast feed my last child...So again what about those statistics on WHO gets this?

May God Bless Us All

LRM216

Angelsabove - I am so sorry that you have to be so young and going through this.  That's another thing that confuses me so.  I was not BRCA tested due to my age at onset of cancer (62) and because there is no history of any cancer on either side of my family, but so many of you are younger than I am - why is that with this dang cancer.  How did I live 62 years before getting it and you are only 36.  I know cancer can kick in at any time, but with this troublesome cancer, and the fact that they state one of the statistics is that it hits younger women, then why me and the other ladies that are triple neg that are older as well - I know quite a few of them from this board and others.  This triple neg, no matter what they say about it, doesn't seem to follow "their" guidelines at all.  The more I read, the less I understand about it.  Wishing you a "quiet" journey and a long, long life.

Linda

angelsabove

Linda,

 Thank you so much. Yes this is difficult and I can only pray that my treatments is taking care of this beast. I dont think they know too much of anything about it. There is a lady I am taking chemo with and she is triple negative and much older than I am. I also read post from MANY women who are older. I just dont get it. I dont think anyone does. That is why after treatment we are just sent away with no further treatment. We just do the scans and pray that it is gone and NEVER comes back again. I know I was so healthy and active. Everyone was SHOCKED when I was DX. I never even caught a cold. Of course with no family history I was considered TOO YOUNG for a mammo. My insurance covers those at 40. Well cancer found me first. I hate this disease. I am working on trying to NOT ALLOW it to steal so much of my days. Although that is hard to do.LOL IAfter I saw my Breast Surgeon for my follow up appointment after my double mastectomy. She said well NO MORE MAMMOGRAMS. I said dang I only did ONE and that was to check out the lump that I found, LOL

 May God Bless Us All

ShellyJo

Angel, I too had a manual breast exam by my obgyn 4 months before my "mound" appeared. I was going to go for my first mammogram. I hadn't gotten around to it yet, I had the script. One day I was getting dressed and arranging the girls in my bra and BAM, there it was..I went back to my obgyn and he felt the lump and and the node was grossly enlarged. Thankfully chemo kicked its butt and made it disappear. I hate this. Even a year later I don't feel like myself..I did just have a bi lat mx with immediate reconstruction, that could be why I am so tired. Idk though, It sux. 

jenn3

Someone asked if anyone had a painful lump.  I too had gone for annual mammograms and annual visits for a manul exam, as well and exam myself.  My lump was very painful, which is why I wasn't worried and did not push up my mammogram date earlier.  I figured if I called the date I already had was the soonest I'd get anyway (2 months out) and my doctor actually said had I called and mentioned it was painful they would not have been in a rush because BC isn't painful. 

angelsabove

ShellyJo,

The day was 4/11/2009 and I went to a martial arts class. The class was three hours long. After that class I was so hot and sweaty. I got home went straight to the shower. I WAS large breasted and most days wore a regular bra and a sports bra for added support. I got undressed to get in shower and thought (DANG) I hurt my boob at that class. I felt around and BAM there was a hard knot. Went back to my obgyn and she scheduled mammo and breast ultrasound. Well when I got to the mammo. the technician said oh dont worry so much breast cancer does NOT hurt. I thought well my lump hurts. Then BOOM the journey began.I am currently doing chemo, I contribute that to being tired. I did not do chemo first....I just hope and pray it is WORKING....

I am curious to know how it is AFTER treatment...The part where we just wait and do scans...I hear that is a very hard adjustment process...

Jenn3,

As I was saying above.....MY LUMP HURT, HURT, HURT.....I just dont get it....We may NEVER get it. I am just praying that something comes our way.  SOON!!!!!

Lots of Love and May God Bless Us All

pinkdove10

Here in india the BRCA gene test in not done....at least my onco told me that it is not required....what to u guys say????

Uma

Indomitable1

PinkDove: It is not required for treatment of your BC but it would give you important info re: increased risk for ovarian cancer, too. I would push for the BRCA 1 and 2 genetic testing-especially given CarynRose's previous post re: her non-Ashkenazi/non-Jewish twin from Mumbai!!

I also agree with a previous poster that the work from Univ of Michigan looks promising. I think that  genetic testing is not always brought up with AA women with BC. TripleNeg's bio indicates that when initially diagnosed, she was told that a mastectomy alone was sufficient tx for TNBC. That is why doing OUR own research, in addition to participating in research studies, is so important for all patients.

Thankful-Survivor

Am typical since my mom died from BC at 32, I was diagnosed at 47 w triple negative, and have BRCA1 mutation. But I am 50% Polish, 25% Scottish, 25% British aka Caucasian.  Oddly enough my Scottish Grandfather, to my Mother, to me seems to be the source! 

To all those that feel there is no family history - note that you can also get BC from your father or father's side of family.  So be sure to inquire if anyone had prostate or colon cancer back a few generations. Also, remember that so far there are 5 different genetic mutations identified not just BRCA1 or 2, so screening (if you decide to do it) should be broader spectrum especially if there is no family history. 

Additionally, I know people first hand that every female for generations has had BC, but they tested negative for all 5 mutations.  There are more mutations out there that cause* BC, they just haven't all been identified. (*These mutations don't truly cause cancer; more accurately, they are less capable of combating carcinogens than the general population.)

Hang in there.  I am 2 1/2 years out and ever so grateful. - Rejoice!

Thankful-Survivor

Yes, my triple negative lump grew rapidly (grade 3), was rock hard, and hurt.  85% of BC is not triple negative, so physicians OFTEN quote those statistics. Perhaps they would be more accurate to qualify statements with "as far as we know," or "most findings indicate."  To them I say, imagine what a rock would feel like under your skin!

Sorry you got pushed back on your mamogram date, that is also due to the fact that the MAJORITY of women have slow(er) growing tumors.  To all I say, know your body, stand up for your well being.

Hang in there.  I am 2 1/2 years out and ever so grateful. - Rejoice!

kane744

Caryn Rose:  I, too, have an Ashkenazi Jewish background and was diagnosed TN.  I've been wondering where it comes from and you have provided a possible answer, if, in fact, there are any answers at all.

lissette80901

Thank you all for your posts and info. I understand now why my onc treated me like I was going to die. I didn't get what being a triple negative meant. I switched oncologists and am much happier with my new one. I had a very painful lump. Since I've had painful lumps before (since age 16) I didn't think anything of it. This time though it started to grow and hurt all the time. They missed the cancer in my first mamo and ultrasound. Thank goodness it hurt so much. I got tired of being in pain and told them to do something. In 6 months it grew from 1 to 5 cm! I am 32, no kids, no family history. Cuban (definitely African descent and possibly Jewish). I find this all so interesting. Are all triple negs so fast growing and appear from no where?

angelsabove

Lissette,

That is definately the way mine did....Came out of NOWHERE.....It also HURT....I thought I had injured myself. I am in the middle of treatment now and I am praying EVERYDAY for healing. I did do the BRCA testing and it came back negative. I had NO family history on either side. I am 36 years old and simply JUST DONT GET IT!!!!!

May God Bless Us All

jcwell

I am white, of German and English descent, had my son when I was 27 and breast fed him for 6 months. My mother is BRAC1 and 2 negative (she was tested rather than me b/c before HIPAA   I was counseled about insurance and results) , and we have no family history of breast cancer, although my maternal grandmother died of ovarian cancer.

However, I am in the midst of my second time through with (likely) triple neg. cancer. Pennsylvania pathology depts throw out all tissue samples and slides after 10 years, so there is no way to tell if this is a recurrence or a new primary with identical characteristics in an identical spot.

My first Dx was at age 32 in 1996. It was Stage 1, Grade 3, invasive ductal, no lymph node dissection, ER/PR- (no HER2 tests back then). I had a lumpectomy (under local - as the surgeon took it out he remarked that he was almost positive it was not cancer but a benign lump. ha.) followed by CMF then radiation.

At the end of this May I felt a bump on my scar. A couple of weeks later it was already noticeably larger. I asked my gyn to feel it during my annual exam in early June, then had a mammo where it did not show, then a core biopsy. I had a bilateral mastectomy with sentinel node (0/2) mid-July just 3 weeks after initial Dx,about 6 weeks after first finding the lump. I have expanders in now, with DIEP scheduled for mid-December at Johns Hopkins (an institution which may have good surgeons, but my experience with the Avon Center was like New Orleans' with FEMA.)

Although the margin was very close, re-radiation is risky and is less of a concern than metastases, as this one was both triple negative and CK5/6 positive, thus is a basal phenotype cancer. I am trying to get in for BRAC testing myself - it takes forever even when it can influence treatment, and certainly prognosis. V

 I am dismayed, and annoyed, that so little is known about effective chemo for triple negatives. There is so little that I think I have now read all there is on it. All that comes up is, again and again, "poor prognosis." I really don't understand why all the info about all cancer experiences are not required to be recorded but docs/hospitals and then data-mining done to find what (even off-label) therapies have been more effective. I understand that double blind clinical trials are the gold standard, but we can't all wait for the gold mine to be discovered!  Clinical trials have tons of problems, not least recruiting subjects, especially for small populations such as ours, keeping enough subjects from dropping out - and almost no trials follow subjects for more than 3 or 5 years out. So, next to nothing is known, and yet much could be known with little added cost.

 And yet - here I am 13 years after the first one.

So much is just luck, it seems.

I begin dose intense taxotere/carboplatinum tomorrow. 

Jennifer

Robyn1982

Hello ladies

Please have a look at my diagnoses  and let me know if anyone is in a similar boat and my age

Diagnosed 25 March 2009, locally advanced infiltrating ductal carcinoma, main tumor 6cm, stage 3B, grade 3 triple negative.

This news was worst birthday present when I received it on my 27th birthday in March this year.  I am 27 with no family history of breast cancer.  I am caucasian and have the smallest breasts out of all the women in my family...they will both be removed shortly after chemo.  Have been on 5 cycles of AC and am on my 2nd of 4 Taxol cycles.  The first two cycles of chemo worked amazingly, shrunk my main tumor from 6cm to 1cm, but ever since then through two types of chemo it seems to be growing back.  In my opinion it's about 3cm now.  Another strange things is that the chemo hasn't affected my menstruation in any way. 

Please let me know if any of you can relate to my situation.

Stay strong. 

From another triple negative.

Great community site!

angelsabove

Robyn,

So sorry you had to join us. You can see my signature @ the bottom. I am currently in treatment. I have one more weekly taxol. That will make #12. Then I will move to something else that I will do once every three weeks for four times. I did my surgery firtst. No one even offered Chemo first. I just have the hope that my chemo is working. I was very large breasted prior to my double mastectomy (which I chose to do) I also have no family history. Not on either side of my family. I did do the BRCA test and it was negative. I am 36 years old and I am caucasian. I can tell you that I did have one menstrual cycle after I started chemo. They have since stopped. I wish I could give you more infor. I just dont get it either. Have they done any scans on you? I did those prior to surgery....OH yea and was told (NO LYMPH NODE INVOLVEMENT) Then about 2.5 weeks later did surgery and BOOM it was in three of them....I hope someone else will come along and give you some more info. I am here if you need to talk and there are a lot of great women on this site who is also in this same boat.....You are not alone.

May God Bless Us All

sylviaexmouthuk

We hear a lot about how aggressive a cancer tumour involving HER2 is. We also hear a lot about how aggressive a triple negative cancer tumour is. Furthermore, we are told that a diagnosis of triple negative breast cancer is the worst diagnosis you can have. Is HER2 more aggressive than triple negative? Can anyone answer this?

I have noticed here in the UK there is more and more headline news in the papers about hormonal breast cancer and the announcement that a cure is not far away. Once again, triple negative cancers are forgotten.

I would also like to know whether anyone has any statistics about the different breast cancers. For example, how many women in the US have been diagnosed with breast cancer this year? How many of these had hormonal cancers? How many had triple negatives? How many had HER2? How many of these women were post-menopausal, how many under 50? How many had hereditary breast cancer?

I am so grateful for this forum. It looks as though there is nothing like this in the UK.

Are we now getting a teacher connection? It would be interesting to find out.

It might be a good idea for everyone looking at this for breast cancer to look as well at the possible hyperparathyroidism, light exposure and osteoporosis connection. How many score four out of four on this? I certainly do.

The latest news in our UK newspapers is that the experts say that 40% of breast cancers are connected to diet, lifestyle, weight etc. That still leaves 60% that are not. What causes these?

Your comments would be most welcome.

kittycat

I'm 39, BRCA1+ and was ER-/PR-.  The initial part of my path report only stated the info on the tumor and DCIS.  There was an addendum to follow on ER and PR receptors, k167 and HER2 pending.  My path report doesn't state anything about HER2 or K167in the addendum.  Only the ER-/PR-.  If I am ER-/PR-, does that mean I'm triple negative???  Strange.  My tumor was not fast growing.  It stayed the same size since I had my first ultrasound in March and had my surgery in August.

Raye99

Hi Robyn,

I too, am so sorry you had to join us and so young - but the younger, the stronger. Like Angels Above, I was told no lymph node involvement, but they found two during an MRI and a third during surgery. I guess I was fortunate that there were only three involved. I had a 5cm tumor (which was supposedly 2.7cm on ultrasound the month before surgery) and a 1cm tumor in the same tiny breast; I found the big tumor myself and like most of you ladies, it came out of nowhere. The tumor did not hurt at first, but I think it grew very quickly and then I could feel it pulling when I moved my arm a certain direction.

I was 39 when diagnosed, and had 4 AC, 4 Taxol followed by 33 txs of rads. My BRCA test was fortunately negative for the mutation, but I did have a prophy mast of my right breast just to be safe.

My background is mostly English with a bit of either Italian or African American (my mom is still working on that - she's into the geneology).

Kittycat, are you HER2- as well? If so, yes, you are triple negative. Maybe not all trip neg tumors are fast growing. Did you have chemo in between finding your lump and having your surgery?

Be well all,

Raye

angelsabove

Raye,

That sounds so much like the way my tumor was. I too was shocked about the node involvement. I just completed my last Taxol...Did 12 weekly. Now I will begin FAC in two weeks. I have.. I think four of those lined up. Once every three weeks. Did you have surgery first or after chemo? 

It seems to me there is NO (typical) triple negative. It seems to strike all ages and races....

May God Bless Us All

angelsabove

Raye,

I also wanted to ad.....prior to surgery I was told 2.5 to 3.0 cm tumor......Day of surgery......it was 4.7......I think I am still in shock over that one....

May God Bless Us All

NavyMom

Hi everybody,

Thank you for all of the wonderful information.  I am also a member of the triple negative club.  I am 49 years old, caucasian, mother of one when I was 29.  Breast fed for 3 weeks.  Zero family history of Breast cancer.  I am requesting BRCA testing next week.  I have 1 of 6 TAC chemo tx done. My hair is coming out in bunches as of today.

I had my annual gyne appt March 31.  I did not feel a lump neither did my Dr.  Went for my annual mammogram on April 22. found a 1.7cm tumor on the right breast.  That night my right breast had a very painful large visible lump.  felt about the size of a walnut. The pain and the lump never went away until I had a lumpectomy on May20 and then the tumor was measured at 2 cm. Bilat MX with reconstruction with lymph node disection(3+ of 17)  on June 30.  I am feeling well.  I have my next TX on Sept 8.  My Onc instructed me to walk/exercise 30 min everyday, no refined sugar and stay away from crowds or people who have been ill.  So that is what I am doing.  So far so good.  I wish I wasn't on this ride but at least I know that I am not alone.  Thank you all for being here and posting so often.  I am normally a positive thinker and plan on staying that way!

Navy

angelsabove

Navy,

Good to hear from you. That is right we are NOT alone in this. I too have always been positive but I have to admit. This situation can sure test it. I actually just got off the treadmill. I did manage to get in 20 minutes.....That was it.....could not do ANYMORE. I too have heard that about the sugar, eating low fat, excercising and of course during treamtment stay away from crowds.

I do worry a bit because flu season coming....I just completed my last 12 weekly taxol...will start FAC in two weeks.......

May God Bless Us All

kittycat

My pathology report didn't state if what I had was HER2 positive or negative.  My tumor was not fast growing.  It was less than 1 cm when it was found on my ultrasound in March and was the same size when they took it out in August.

Sher

Not sure where I fit the mold exactly.  I'm caucasion and original diagnosis at age 52 was ER/PR+, HER2-.  At age 60, I had a local recurrence (although 1 oncologist stated it could have been a new primary although unlikely) in the same exact spot which turned out to be TN.  Never BRCA tested. 

Raye99

Yes, I read that triple negative is just a grouping that they put us into because we are not ER/PR+, and our cancers can be very different, although I see many similarities among us.

Navy Mom, good for you for getting your exercise! I had a hard time with that. It was easier for me to just eat right and yes, stay away from the sugar and caffeine and crowds. I used to run about 5 miles every night before dx and I just can't seem to get back into it regularly. No, you are certainly not alone in this- we are all here for you. Also, all of the things you mentioned about having a child before 30, breast feeding - I've never had children, so obviously didn't breast feed and was on the Pill for years, all of which I thought may have contributed to my bc. There is no answer, I've come to believe that. Maybe contributing factors, but no clear cut "why did I get bc" straight answer.

Angels - Yes, the tumor coming out of my body being much larger than anticipated was a shocker. The bs said that perhaps that tail of the tumor was not caught on the ultrasound and therefore, not counted in the measurement, but I could feel it had gotten bigger.. What is FAC? I had a mast of L breast and then started chemo about a month later. Went back the next year and had prophylactic mast of my right breast because the genetic counselor said that although I was negative for the BRCA mutation - that I still had a strong chance of getting  bc in the other breast. He also recommended an ooph, but I didn't do that.